Tegan Beyer, 34, feeds her infant, 6-month-old Joslyn, a bottle of donated breast milk. Beyer was recently diagnosed with breast cancer and is recovering from a bilateral mastectomy. / John Ziomek /Gannett

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Kim Mulford, Gannett

The 34-year-old married mother of two has a track record on this issue. When she had her son, Talon, four years ago, she wasn’t able to get him to nurse at the breast. So she pumped her milk every three hours around the clock, producing enough to keep him well fed from a bottle. She pumped for 20 months.

When daughter Joslyn arrived in January and successfully latched on the first try, it was a joyous event.

“I produced a lot of milk,” said Beyer, a tattoo artist who lives in Mount Laurel, N.J. “I was made for making milk.”

But Beyer can’t nurse her baby anymore. On June 6, a suspicious lump she discovered in her breast shortly after Joslyn’s birth was at last diagnosed as invasive ductal carcinoma. She was ordered to stop nursing her baby immediately and prepare for more tests, surgery and chemotherapy.

Beyer called her friend, Cristin Mahoney of Cherry Hill, N.J., a breast-feeding mom whose youngest daughter is just three months older than Joslyn.

“She asked me if I had any breast milk,” said Mahoney. “I did have 32 ounces in my freezer, so I got that over to her. Since then, I’ve been pumping every night,” enough to provide one bottle for Joslyn each day.

It was the beginning of a monumental effort by a local community of breast-feeding mothers and their supporters. Since then, Beyer’s baby has been fed with donated breast milk collected through a closed group on Facebook.

“People have come out of the woodwork,” said Beyer, during a phone interview from her hospital bed where she was battling an infection following a bilateral mastectomy. “She drinks 30 ounces a day right now.”

It’s called informal milk sharing — informal because the donated milk is not screened, tested or processed to ensure it does not contain viruses, harmful bacteria, medications or illegal drugs. Instead, the arrangement relies on honesty, openness and trust between its donors and recipients.

While the American Academy of Pediatrics and the U.S. Food and Drug Administration recommend babies drink breast milk for at least one year, both organizations recommend against informal milk sharing.

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Instead, says the FDA, after first consulting with your health care provider and if you have decided you still want to use human milk, “you should only use milk from a source that has screened its milk donors and taken other precautions to ensure the safety of its milk.”

That’s hard to do when the nearest milk bank is in Ohio, and only dispenses milk to hospitals or with a doctor’s prescription, according to Diane Spatz, the leading breast-feeding expert at Children’s Hospital of Philadelphia and a professor at the University of Pennsylvania School of Nursing.

Human milk costs about $4.25 per ounce, Spatz said. That means it could cost $100 or more each day to feed a growing baby — and that’s if the milk is available.

“We don’t really have a sufficient number of milk banks in the United States,” said Spatz. “Currently, they’re really just meeting the needs of hospitalized babies. That puts women like (Beyer) in a really challenging position. They understand the value of human milk, they don’t have access to milk banks and they don’t have an alternative to informal milk share.”

“As a health care provider who practices in the United States, it’s hard for me to recommend (milk sharing) as a practice because there could be risks associated with it,” said Spatz. “It’s very understandable that women do it.”

Long-standing practice

Milk sharing has been practiced since the beginning of time, its advocates say. Indeed, the World Health Organization recommends wet nursing (breast-feeding another woman’s child) and milk sharing before using formula when emergencies force nursing mothers to stop breast-feeding. It recommends first testing donor mothers for HIV.

Eats on Feets, an online community of milk-sharing advocates, also offers a list of recommendations for arrangements between milk donors and recipients, including specific blood tests and questions to screen donors.

Nicole Buratti, coordinator for Eats on Feets New Jersey, said demand is high for donor milk, especially in New York and Pennsylvania, though she has more donors than recipients at the moment.

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“I’m finding there’s a lot of people looking for milk and people willing to travel for milk,” said Buratti.

Myriad reasons parents seek donor milk

Usually, parents search out the donor milk for medical reasons that prevent breast-feeding, anything from low milk supply to breast cancer. Adoptive parents and gay couples who have used a surrogate to have a baby also sometimes seek out human milk for their babies.

In other countries like Brazil and France, milk banks are much more accessible, making it easy to get donor milk, Spatz said.

She wants to see more grassroots efforts to increase the number of milk banks in the United States so donor milk that has been screened and treated is accessible to all women who need it. She also wants insurance companies to pay for breast milk if it is needed.

But the United States is a long way from that ideal.

“Our culture isn’t really at the point that we value human milk above all else,” said Spatz, whose hospital views breast milk as a medical intervention for its infant patients. “A lot of people see formula as an OK alternative.”

Despite the risks, Beyer’s network of supporters are passionate about the value of their breast milk and their work to feed her baby.

Breast milk contains antibodies and nutritive qualities that cannot be replicated by formula, they said.

Thalla-Marie Choxi is one of the administrators for Beyer’s milk sharing Facebook page, and a donor herself.

In Beyer’s arrangement, Choxi said, mothers are asked to only donate milk if they would feed it to their own kids. They are also asked to alert the administrators if they have taken any medications, and they are asked not to donate if they drink alcohol or smoke.

Beyer said their work has enabled her to focus on getting better. Her baby girl is healthy and growing fast.

“You do really have to trust people, but at the same time, it’s milk they’re feeding their own babies,” Beyer said. “If they’re going to feed their babies, you have to have faith. You have to have trust.”